Privacy Policy

Effective February 11, 2013

Lightning Medical Research, (“LMR”), (www.Lightning.com), (the“Site”) is primarily a medical data collection web site.

LMR operates separate data collection sites for each “Selected Disease” (for example, www.ClubPD.com, which is also accessible as www.ClubParkinson.com and www.ClubParkinsons.com). This Privacy Policy extends to any and all such “Sites” operated by LMR.

Our goal is to eradicate, and / or treat, selected diseases by providing a real-time platform for Patients to share their profile and disease information / experience with Scientific Researchers, under LMR’s management.

The process involves building a vast, collective, global knowledge about selected progressive diseases, and their treatments. This data will be constantly analyzed for new research opportunities, as well as aiding existing research endeavors.

We know our success in achieving these goals depends on a shared belief that we can collectively amass individual data for research purposes, both analyzing the data and selectively supplying it to qualified Researchers without having to disclose the Patient’s identity to any Researcher. (Unless in some special cases disclosure of identity is pre-authorized by the Patient - this situation, for example, may arise where a Patient agrees to participate in a specialized, controlled study which also involves clinical visits.)

This Privacy Policy outlines both the type of information Lightning Medical Research collects from individuals who have registered to join any of the sites operated by LMR, as well as how it is shared with other third parties, including, but not limited to, Scientific Researchers, pharmaceutical companies, medical device companies, non-profits, and research institutions (collectively “Partners”), which are deemed, by LMR, to be furthering, or likely to further, the cure and / or treatment of a Selected Disease.

We reserve the right to modify this policy at any time, and without prior notice, by posting an amended Privacy Policy and terms on this website. We encourage Registered Members, as well as non-Registered (restricted-access visitors), to review this policy periodically for any updates.

 

What kind of information we collect

Shared Data

LMR’s policy is to NOT disclose a Registered Patient’s identity (“Name”) to any party receiving “disease related data” supplied by that Patient. In other words, LMR’s policy is to always provide your disease related information to Researchers minus your identity, by identifying you as a number which changes from one release of disease related data to another release thereof.

For example: Parkinson’s Scientific Researcher Dr. XYZ is registered with ClubPD, and is investigating the relationship in PD Patients between ethnicity, being female, exercise history, being under 50 years of age, and prior exposure to golf course pesticides.

LMR can immediately extract this statistical data from its databases. When transferred to Dr. XYZ, the data on these items transfers without the Patient's name. Your data, if you fall into these criteria, is identified in the report by a number generated by LMR for that data request only.

Some of the information that Members provide about themselves may be shared with the Lightning Medical Research community, Partners, and others (“Shared Data”). Examples of Shared Data that Registered Members may submit at the Site, for example through their health profile, may include:

  • Biographical information (excluding identifying data like your Name, Address, unless by separate prior agreement). Examples would include gender, age, location (city, state / province / prefecture and country);
  • Condition / disease information, for example, diagnosis date, first symptoms date, family disease history;
  • Treatment information, for example, treatment start dates, stop dates, dosages, side effects, treatment evaluations, disease progression test scores;
  • Symptom information, for example severity, duration;
  • Primary and secondary outcome scores over time, for example UPDRS, Quality of Life, weight information, height;
  • Laboratory results, for example; blood pressure, glucose levels
  • Genetic information, for example information on individual genes and/or entire genetic scans;
  • Individual and aggregated survey responses;
  • Information shared via free text fields, for example “Hunch Corner”, treatment evaluations, surveys, annotations, journals, feeds, adverse event reports;
  • Connections to other people on the Sites, for example Primary Caregivers, invited care team members, mentors, feeds, subscriptions, chat rooms, blogs. In the course of using some parts of the Site(s), (for example Chat Rooms, blogs, “Hunch Corner”) some Registered Members may choose to also share information that could be used to reasonably identify them (“Personal Information”), for example their name, photograph, and email address. When a Member chooses to share Personal Information via a free text field (chat room, blogs, Hunch Corner, treatment evaluations, annotations, FaceBook links, tweets on Twitter, journals, feeds and adverse event reports, and photos or other images), this information shall be then treated as “Shared Data”. In other words, if you put your personal data, such as identity, address, phone number etc., into the public domain (by whatever means such as the internet, newspapers, TV etc.) then we may henceforth regard such data as “public” and “Shared Data”.

Restricted Data

Some of the information that Members enter into certain fields when registering to use or using the Site will not be shared (“Restricted Data”). The type of Restricted Data that Members may submit at the Site may include:

  • Name, as collected as part of Registration or in a Registered Member’s Account Profile;
  • Email address, as collected and verified as part of Registration or in a Registered Member’s Account Profile;
  • Password, as collected as part of Registration or in a Registered Member’s Account Profile;
  • Mailing address, as collected via email, forms, or private message as part of Registered Member programs;
  • Private communications related to any of the above between LMS and a Registered Member

When a Member enters Personal Information, including name and email address, as part of Registering to use Lightning Medical Research, that Personal Information is treated as Restricted Data.

Cookies

A cookie is a small data file that often includes an anonymous, unique token, which is sent to your browser from a website’s computers and may be stored on your computer’s hard drive. Two types of cookies may be required to use the Site:

  • Session Cookies are temporary cookies that remain only until you log out of the website or exit your web browser. Session Cookies do not store any Personal Information, only a unique visitor ID number that may be used to ensure Registered Members are properly authenticated and can view site information
  • Persistent Cookies remain in the cookie file of your browser for much longer, even after you leave the Site. Persistent Cookies also do not store any Personal Information. Persistent Cookies store preferences that should persist from visit to visit, like “Remember Me,” and a unique token to enable us to understand how Members use the Site.

How your shared and restricted data is used

Members should expect that every piece of information they submit (even if it is not currently displayed), except for Restricted Data (identity etc.), may be shared with the  Research community, other Patients and Partners (in aggregated form showing trends, probabilities, relationships between variables, or other beneficial data). Members are encouraged to share health information but should consider that the more information that is entered, the more likely it is that a Member could be located or identified. In principal, LMR will seek to ensure that tranferred data covers a selection of data catagories that is unlikely to facilitate identification of the Patient.

There are instances where both Shared Data and Restricted Data, including Personal Information, may be used and disclosed including, but not limited to, the following:

  • Lightning Medical Research uses both Shared Data and Restricted Data internally, as needed, for research, for maintenance and operation of the Site, and to create the best possible tools and functionality for Members.
  • Lightning Medical Research may use a Member’s data in the case of an emergency, or other circumstances, that we determine requires a member of the management team to directly contact the Registered Member.
  • Lightning Medical Research may share or disclose a Member’s data where required by law, or to comply with legal process.
  • In the event Lightning Medical Research goes through a business transition, which LMR deems to be in the interests of erradicating a disease, such as conversion into a Trust, a merger, acquisition by another organization, or sale of all or a portion of its assets, the Shared Data and Restricted Data, including Personal Information, might be among the assets transferred. Members will be notified via this Site of any such change in ownership or control of Personal Information.

How Shared Data is Used

We report publicly Shared Data (does not include identity / name data) in aggregate, such as the number of Registered Patients on a particular treatment, or the number of patients experiencing a particular symptom, or sharing common environmental conditions or exposures.

In addition to serving the individual needs of our Members, Lightning Medical Research and its Partners are interested in better understanding the patient experience and improving treatment options and health outcomes for everyone. For example, we may look at questions such as, “Do certain treatments work better for some types of people versus others?” Lightning Medical Research may provide this data (without identities) in aggregate format, to Partners and other third parties for use in scientific research, on any terms which LMS deems to  be appropriate, in order to speed the progress of a cure and or improved treatments.

Lightning Medical Research will periodically ask Registered Members who are also Patients to complete questionnaires / surveys about their experiences of disease(s), medications, life-style choices regarding subjects such as (but not limited to) exercise, diet, environmental living conditions. Survey responses are stored, date-stamped, analyzed, combined with that Registered Members’ other data, and may be disseminated in whole or in part to Researchers and other Partners (minus identifying data such as names). Registered Member participation in these surveys is not mandatory, and refusal or inability to respond thereto will not impact a Registered Member’s experience on the Site. It will however, detract from the overall ability to amass the data required to speed the eradication and / or enhancement of treatments.

Lightning Medical Research may also report individual adverse event and drug safety information to the FDA, CDC, and/or other regulatory bodies (U.S. and international) as well as directly to pharmaceutical and biotechnology companies. Lightning Medical Research does not provide Restricted Data to such regulatory bodies, although we reserve the right to contact Registered Members for follow-up at the request of agencies or Partners

How Restricted Data is Used

Restricted Data (identity data such as names, address, telephone) is not provided to other Members or Partners. Specific instances where Restricted Data may be used include, but are not limited to, the following:

  • If a Registered Member’s profile (who is a Patient) happens to fit the subject profile for a research study which needs such qualified Patients, then LMR may email that Patient to determine whether that Patient has any interest in participation in that study. If the Patient agrees to participate, then LMS will need to supply identity information (under an extended but limited agreement) to the Researcher.
  • If a Patient seeking medical care chooses to contact a Registered Doctor / Neurologist / Nurse / other health professional who is Registered or listed on the Site, then a transfer of identity data (not other data) will be required to make contact, and such action by the Patient will be deemed to have authorized such transfer of identity data.
  • If a Member agrees to participate in a media interview (as arranged by Lightning Medical Research), Lightning Medical Research will share the contact information the Member provides (i.e. name, email, telephone) with the reporter for the purpose of conducting an interview;
  • If LMS determines that it is beneficial to operate a public registry in the future (at present it does not) and a Registered Member OPTS IN to such a public registry, then LMS will display the Member’s name and some Shared Data and/or Restricted Data as part of this registry (which would then be viewable by anyone on the Internet);
  • If a Member makes a request, Lightning Medical Research may use Restricted Data, including sharing the Member’s Restricted Data with software/service vendors, for the purpose of fulfilling the request. Examples might include requesting to receive a LMS or Club_____  newsletter via email, requesting an email response from the Lightning Medical Research support, and requesting any promotional materials, medical products, genetic testing kits, etc. be mailed to the Member’s residence.

Other security issues

Lightning Medical Research cannot guarantee the identity of any other Registered Members with whom a Member may interact in the course of using the Site (for example a blog or chat room). Additionally, we cannot guarantee the authenticity of any data that Registered Members may provide about themselves.

Finally, Members should know that Lightning Medical Research takes commercially reasonable technical precautions to help keep Member data secure.

EU Safe Harbor

Lightning Medical Research complies with the United States - European Union Safe Harbor Framework and the United States - Swiss Safe Harbor Framework as set forth by the U.S. Department of Commerce regarding the collection, use, and retention of personal information from European Union member countries and Switzerland. Lightning Medical Research has certified that it adheres to the Safe Harbor Privacy Principles of notice, choice, onward transfer, security, data integrity, access, and enforcement. To learn more about the Safe Harbor program, and to view Lightning Medical Research’s certification, please visit http://www.export.gov/safeharbor/

 

Questions about the Privacy Policy

If you have questions or comments about our Privacy Policy, contact us at:

privacy@lightning.com

or

Lightning Medical Research Inc.

Attn: Privacy Issues

16313 Millan de Avila

Tampa, FL 33613

USA

 

 History of Updates/Changes to Terms and Conditions of Use:

  • On Feb 11, 2013, this Privacy Policy was posted in its original form.